Life With an Autoimmune Disease

Life With an Autoimmune Disease

I felt like this would be a good time to kind of explain how autoimmune diseases can impact life. I don’t know what my autoimmune disease is, just that I have it. When I was little, around 6, I got sick. Very sick. It was around the time that Lyme Disease was highly publicized. My doctors felt that I probably had Lyme, but my tests for Lyme came back negative time and again. They decided to treat me as if it were Lyme, which meant antibiotics for about a year. My parents fought the doctors for a diagnosis. I went to U of M Hospital, I went to a hospital in Wisconsin, no one could figure out what was going on. But my parents fought long and hard for me. I remember being in complete shock when my mom yelled at my doctor. Because my mom doesn’t yell. And definitely not at a doctor. But I was utterly dismissed. I was 6 and struggling with debilitating exhaustion, double vision, rashes, joint pain, etc, and the doctor, unable to find an answer, decided that I was probably making it up for attention. That was the beginning of my uncertainty of doctors.

My symptoms went into remission, and I really didn’t think about it again until I got sick again when I was around 20. I went to the doctor, and got no answers other than that I was likely unable to get pregnant without medical intervention (which not only was completely false, but also not why I was there, and no testing was done for that, so why he felt the need to tell me that is beyond me). My hormones were not balanced with each other, but each was “within normal range” individually. So, he wouldn’t even address that, saying there was no issue (other than, you know, that I wouldn’t be able to conceive naturally. Which, again, was completely false). I kept going back and asking for referrals. Finally, to get me to shut up, he referred me to a couple of specialists. One was not helpful at all. At all. She told me that my adrenals were not functioning properly, but that there was nothing that could be done. The other did some tests and found that I have an autoimmune disease. It was, at that time, destroying my thyroid, but it was not Hashimotos. He told me that he didn’t know what it was and that he’d not seen in before. What that meant was no diagnosis. An autoimmune disease and no diagnosis. Which meant that doctors to follow wouldn’t acknowledge it.

Again, it went into remission until I was about 27. At that point I was doing extended crossfit 4 days a week, sometimes 5, and was eating no-carb Paleo. Just meat and eggs. You know what one of the doctors suggested after I explained that to her? She suggested I stop lifting weights and increase the cardio, because lifting weights “makes you gain weight,” and she told me to reduce my carbs. I was already eating ZERO carbs. I was so exhausted I couldn’t function. I went to work and came home, a single mother, and laid on the couch until I put my daughter to bed, and then I went to bed. I was a terrible mother. But I needed to work to support us, and I was so drained that work was more than my body could take. When it first started, I thought working out more and restricting my calories was the way to counteract my weight gain, which was happening out of nowhere, and my fatigue. I was wrong. I spiraled downward quickly.

I finally got my hormones balanced, and my HPA axis working as optimally as possible, and my thyroid and autoimmune disease seemed to be relenting. And then I found out I was pregnant with my little surprise. That kind of threw me out of whack all over again.

My current doctor diagnosed me with Hashimoto’s last year, mostly just so that I’d have a diagnosis. It’s not truly Hashimoto’s, and I don’t really have any course of action or any idea of what to expect. I am allergic to gluten and casein, which my doctor suspects is due to my autoimmune disease, as those often go hand-in-hand. So for now I just try to take care of my body as much as possible and avoid pushing physical limits.

Present Day

Saturday, I did the March For Our Lives march, locally. It was a gathering with some speakers, and then a walk around the park. It was very cold out and incredibly windy. The walk was brief. But when I got home I was so wiped I couldn’t function. And I couldn’t get warm. My husband brought my heated blanket down for me to try to warm up with. But I was out of it and my patience was at an all time low. I went to bed. And I stayed in bed until the next morning. An autoimmune disease and adrenal dysregulation can wipe you out so much that you can’t function. That you can’t be a mother or a wife. That you can’t be anything.

It’s frustrating. And it’s embarrassing. And it’s saddening. And it makes you feel like you’re not a worthwhile person. Because your body is literally failing you, but you’re not terminal. It’s not cancer, it’s not a visible illness or disability, so you just look lazy. And so you feel like you’re just lazy. And that is really hard. My husband is very understanding. He let me rest. He is supportive. But I know it has to be frustrating for him. And I know it must be annoying when I look fine, but can’t get out of bed. I’m lucky because it’s not every day for me. I’m always tired. I’m usually quite fatigued. And that definitely impacts my life and what I can do. But it doesn’t usually leave me in bed all day.

I have this beautiful family and this beautiful life, and I feel like I am letting them down all the time. Not because I want to, but because I don’t have the energy, and with that I lose my patience. I start each day off with the energy and restfulness that most people end their day. By midday I am exhausted and truly just am counting down the hours until we pick up my 9 year old, which is a break in providing my 13 month old with my undivided attention, and then about 40-50 minutes after we get home my husband gets home and relieves me from the baby. How awful is that? I look forward to being relieved of parenting. It’s a horrible feeling. I don’t feel like I deserve to be the mother of these awesome girls. I have to remind myself that I’m doing the best that I can and that I’m not just being lazy.

This is where acts of self-kindness come into play. I have to actively remind myself that I’m not lazy. That I’m not worthless. That I have a body that doesn’t work the way that it should; that is literally attacking itself. That the best thing I can do for my girls is to take care of myself as much as possible so that I can present them with the best mother I can possibly be. But that’s not an easy pill to swallow. When you feel so tired and sore and drained all the time, it’s hard to remember to be kind to yourself. You feel like not only do you not deserve it, but that you’re selfish and self-serving for even considering it. We live in a society in which mothers are supposed to be and do everything. And do it tirelessly. When you physically cannot, and you don’t have a visible disability, it really makes you feel like you’re undeserving. Like you’re lazy.

That, in a nutshell, is life with an autoimmune disease.

***I am not a medical doctor and nothing in this blog is medical advice or to be used in lieu of medical treatment or advice from a doctor.

Raina, thank you! Self-care and self-love are so, so important and something that is widely overlooked and even unknown in our society. I’m so glad you are not only aware of it, but are actively engaging in it. =)

I couldn’t imagine the daily frustration one must feel with an autoimmune disease. However, I feel like the fact that you are facing it, sharing it with the world and educating others about it makes you one heck of a person! Your family is lucky to have you and your DH sounds amazing for letting you rest and giving you the time you need. Keep fighting and I will be praying for you!

This was a very eye-opening, yet heartbreaking read. I can’t imagine how this must feel, and I love how you explain that it often gets overlooked because it’s not terminal, although your body is still failing you. I wish you all the best; just keep on keepin’ on!

Thank you, Heather! The more I delve into autoimmune diseases, the more I realize how vast they are and how many people are afflicted with them. It’s really eye opening. Hopefully as more research is done, more will be understood about causes and treatment.

Thank you for sharing this. Right now I am going through testing for autoimmune disease, my doctor sent me for a Lupus test last week whoch came back negative and have more tests to undergo. From reading lots of articles I have read that it can take years to detect which autoimmune disease I could possibly have,and its a posdibility of having more than one type of disease.

My blood results are also not great and I have seen that Leukemia and bone marrow cancer is also a possibility.

Do you have any advice on sleeping? I am overtired, not sleeping and wide awake even though my doctor has prescribed antidepressents and sleeping pills. I have probably slept 6 hours in 5 days. I am also trying to look into different diets and natural remedies to help.

I really do feel useless in regards to helping my family, right now my husband and daughters do everything. I am on prolonged sickness from work after being of six months last year, going back again this year for about five weeks catching what seemed to be a flu and off again since.

I really don’t know if its time to give up work or how I will be, each day I seem to discover new symptoms and I am exhausted.

Thank you for sharing this a lot of the feelings and emotions in what you are going through I can relate to.

Oh, Gloria, I am so sorry you’re going through all of this. It’s such a nightmare. I hope you get some answers soon. Have you tried magnesium for sleep? I am magnesium deficient, and I take natural calm (or the generic from Vitacost [which is on sale right now; I just stocked up last night]) every night. I also suffer from chronic constipation, and that helps me tremendously. But it can also help with sleep. Eating a mixture of himalayan salt and raw honey before bed can help nourish the adrenals, which can help to balance cortisol levels, allowing sleep. I also highly recommend sleeping with ear plugs. I have adrenal fatigue/adrenal dysregulation/HPA axis issues, which can cause me to be really responsive to stimuli. For example, stress can cause me to get stuck in fight or flight, with adrenaline surges that won’t stop. I just shake with all of the adrenaline. I didn’t realize that I was startling in my sleep, or while I was trying to sleep. I don’t really even know how it dawned on me to try ear plugs, but one night I just did. And it made an incredible difference. I must have been startling awake at every small sound. And each time, I’d get a shot of adrenaline, and then couldn’t get back to sleep for hours. I have sensitive and kind of small ears, so the foam ear plugs just don’t work for me. But I use the pillow soft silicone ear plugs, and have no issue with them. I can’t sleep without them, and don’t try!

I also really recommend meditation, and if you’re up to it, relaxation yoga. There are a ton of good relaxation yoga videos on youtube, and you can kind of shop around until you find someone you really like. Just make sure it’s a relaxation or “gentle” yoga. Insight Timer is a free app that I love for meditation. It provides tons and tons of guided meditation, with pretty much whatever length you’d like. I have found that my sweet spot is about 10-15 minutes. That’s long enough for me to really get into it and get my body to relax, but not so long that I fall asleep or get so distracted that I have a hard time returning to it. With meditation, just remember that everyone’s mind wanders; it’s totally normal and inevitable. When you catch it, just start focusing on the meditation again, don’t worry about it or get frustrated.

I really hope you get some relief. Even with all of the things I do, when I’m under extreme stress, I can’t sleep. I just went through an about 2 week period with close to no sleep. It was brutal. But now that I’m outside of the the worst of it, and focusing more on the things I mentioned, I’m getting some sleep again. Just hang in there!